*Foxwood Special School, and all their staff for making Mias time at big school so special

*Alder Hey ICU & Warrington Resus & Theatre Team for saving Mia's life in June 13

*CDKL5 Support Group for always being there for Mummy in the good times & the bad

*The Liverpool Rett mums & daughters for making this journey that little easier

About Mia...

Mia Katie Loudon was born on July 24th 2003 in Warrington Hospital, Cheshire, England.
All was well with Mia until she was 2 weeks old. I was about to put Mia
in the bath and she has this “thing” in my arms, my gut reaction was that she’d
had a fit. It was a Saturday so I called the doctors and explained that I thought
my 2 week old baby had just had a fit. The doctors laughed at me and said “2 week
old babies DON’T have fits”. He said I was being paranoid and that it will be severe
colic!!! I was unsure but he was the doctor! Mia continued to have them and over
the coming weeks I continued to take her to the GP, to the dietician thinking it
could be a lactose intolerance and even the health visitor and they all told me
the same that it was colic. When Mia went for her 6 week check I thought now would
be a good time to address my concerns further, when asked did she smile I said no
not really but the GP put words in my mouth and ticked the box in Mias “little red
Book”, the same then with fixing and following. I said no not really the GP mumbled
something and ticked the box. And so on….

When Mia was 10 weeks old I took her back to the doctors one last time with the intention of making him refer
me to a specialist. She had 2 fits in the waiting room. When I finally got in to see the GP he said “Well without me
seeing one, what would you like me to do? If you’re so bothered take her to accident
& emergency”!!!!!
So I did.

In A&E Mia had 6 more fits, thankfully the doctors were all there to see them
and diagnosed siezures.

2 weeks later after a barrage
of tests, eegs and brain scans, Mia was diagnosed
with a form of epilepsy called “Hypsarhythmia” or “West Syndrome”.
I remember when the doctors told me about Mias epilepsy, I thought my whole world had ended! Little
did I know there was much worse news to come!

Mia was also diagnosed by visually impaired teachers and her ophthalmologist as
Partially Sighted / Blind. This is because she has never fixed or followed.

When Mia was 14 months old in Sept 2004, we were told she would never walk or talk
that she would need adult care for the rest of her life and she would be backward!!!
I remember feeling numb and leaving the clinic in floods of tears. My husband would
get
aggravated with me saying I was a pessimist and was always listening to the negative
side of things. But I wasn’t. I was being realistic, I’m her mum and I knew what
they were saying was the truth. That’s when I started to grieve for the little girl I was never going to have.

In March 2005 when Mia was a couple months
off her second birthday. Her chest got into a terrible state, with every fit she
was having Mia was vomiting, large projectile vomits. As you can imagine because
this was a regular thing it made a real mess of her chest. Therefore, we agreed that Mia should have her name put down for a Fudoplication.
(an operation where the stomach opening is closed up
to stop vomit or reflux). This
was a necessity for Mia a matter of life or death.

When Mia was 23 months old she went into status for 2 days (a seizure), when she
came out of it she has lost her swallowing reflexes. She had previously eaten 3
meals a day orally no problem (mashed consistency) and had learned to drink from
a cup. I was told that it was the amount of drugs she had over the last 48 hours
and that it would come back I just had to give it time. In the meantime she had
to be fed by a NG tube, we also started the Ketogentic diet. Mia vomited constantly.
This went on and on then after about 6 weeks in the August 2005 Mia was given a
Peg in her stomach! I was totally against this in the beginning but after having
to pass NG tubes 2 or 3 times a day because they were blocked or she had pulled
them out I was glad of it. 6 Months later she had the Mic-key button fitted!

The following month in September 2005, we were still in hospital I had a phone call on the ward to say that the geneticists were on their
way down to see me! The big moment had arrived.
I was taken into a room with my primary nurse, the geneticists, Dr Emma McCann and
a councillor. They said “as you
know Mias DNA was sent away and tested for the Genetic mutation CDKL5, unfortunately
it came back positive”. I was so relieved; I swear I physically felt a weight lift
from my shoulders. I had spent so long in hospital talking to other mums and families
I had kind of come to the conclusion I was never going to find out what was wrong
and thought it didn’t matter what was wrong with Mia. After all it wasn’t going
to change anything. But when the Dr said that it was positive I never realised how
much I wanted it. That was it, it was over. The waiting, the wondering. I then
burst into tears with relief.

Mias Fundoplication was a not until July 2006. Thankfully it was a success. Fingers
crossed since that day not 1 vomit. At first it was awful to watch Mia wretch, sometimes
she goes blue because she is trying to be sick that much. But if we hadn’t had the
operation done I truly believe Mia wouldn’t be here today. There is always the risk
that the operation could undo but we’ll cross that bridge when we come to it.

In September 2006 we tried the ketogenic diet again, a last ditch attempt before
her VNS in Jan 07. By the time December 2006 came it was decided to come off the
diet as it had no real effect. Mia was quite poorly at the time, problems with her
oxygen levels again. So they decided that as Mia suffers alot with tonsillitis that
it was wise to get them out asap. So on December 12th 2006 Mia had her tonsils out.
Tonsillitis was the only thing that made Mia sad. She would whimper, and have a
sad look about her. Not any more. Mia surprisingly recovered really well from the
operation, no infections.

Mia had her VNS fitted on January 23rd 2007. She was down for 3 hours but apparently the operation was text
book. They activated the VNS in theatre. Mias fits went through the roof the first month after her operation.

We have since been back to the hospital twice for the VNS turned up and the Magnets
issued. (These are used to activate the VNS during a seizure to decrease
the intensity of it and bring her out of the seizure feeling less tired and increase
alertness.)

Last Updated March 2007.

In Conclusion

Mia has had over 17,500 siezures in her life
Over
25 Admissions to Hospital
5 Operations
3 Admissions to High
Dependency
1 Admission to Intensive Care